niknash: Need reassurance and hope

[niknash]

Niknash

 

I also post at ****** so i am copying my first post below. Ith as been about 4.5 months since I came off Lex. I also believe I am experiencing an adverse reaction to a reinstatement attempt about 3 weeks ago. I will post my most recent posts at the bottom including the dates.

 

 

 

Hello I am new posting to this site (but have been looking on it for months now).

 

Here is my story. I went off the Lexapro way too fast and in the wrong way. I came off mid/late August so I am around 4 months off now. My schedule was given to me by my GP - one every other day for two weeks and then stop. I thought that sounded a bit too fast so I did, that, then one every 2 days, the one every 3 days, then 1/2 every other day, then half every two days, then half every three days. Took about 2 weeks at each so a little over a month/ month and a half. I might have even done one every four days twice at the end.

 

I know that my schedule was way too fast and made even worse by skipping a day/days in between. ...I am soooooo mad at myself for not seeing a psychiatrist (instead of my GP) or not looking up any info on how to come off before I did it. I guess when you are feeling so good for 4 years on Lex and are extremely happy you never can imagine that something like this can happen to you. I really never knew anything like this existed. I knew there was some type of physical withdrawal (because I did have the brain zaps when I came off zoloft) but didn't know that it could last year -who would ever think that?!! I went off Lex in mid/late August, went on a trip to Italy mid-Sept...starting feeling the worst of it on that trip and then again 2 weeks after I returned.I also believe I

 

As I mentioned I was on one ssri previously -Zoloft - for approx. one year (6 years ago). I was put on it by a neurologist .....see more details on that below*. So about 8-9 months after stopping the Zoloft, I go on Lexapro. I loved the way I felt on it (that is the sad part in all of this). I started out with dry mouth, some sexual side effects, a little more sleepy but nothing noticeable but those all evened out over time. I never gained much weight on it (I am very petite, at my heaviest I am 115 lbs) or had any other problems/side effects.

 

So I weaned off ..I don't think any of my physical effects were that horrible but then again I was really trying to push through them (as I thought once I got past these initial physical things I was in the clear). I didn't have too many zaps (although I was taking pre-natal vitamins and omega-3/DHA because I was planning on getting pregnant soon, so I think this may have helped). I remember calling up to ask my dr, having a rapid heartbeat or feeling more nervous was normal during withdrawal, he said yes. Looking back I was sick the week before going to Italy (Sept 14-23). I had a low-grade fever, felt feverish and just sick...dr told me i had a virus. I was very "nervous" about going away with a fever. I think this uneasy/nervous feeling was the withdrawal anxiety creeping in. I cried a few times while we were in Italy about the fever not going away and had nervous/anxious ball in my stomach during dinner most of the nights there. It felt a little weird/ not like my usual anxiety but I got past it.

 

When I got home I started feeling the anxiety even worse but I figured I would get past it. However I made an appt with a psychiatrist to see what she thought - of course she said my original anxiety returning. Before I went to see her I looked up withdrawal and realized this is probably what I was experiencing. The anxiety was so different than in the past - it felt chemically induced, there was no reason for it, it was happening out of nowhere...very fast heartrate. Anyway, she wanted me to go back on my meds for a few months and then I could come off slower (I should have listened even though I didn't agree with her reason for going back on). But I thought it would go away soon and I could stick it out. By the time I considered reinstating it was past the 6 week mark they listed on drugs.com so I thought I had no choice.

 

For the next few months following, up until today, I read probably every single post on drugs.com and then more recently on paxil progress. I kept wondering back and forth, if I should go back on. I have cried to my husband, parents and sister everyday about what my life will be like..thinking I have ruined my life. And looking for any posts to make my bad situation seem better...not many are promising.

 

About 2 weeks ago I had a major breakdown ( on the floor hysterical crying & shaking) over the thought of having to do this for years and not knowing what is coming next. My husband, parents and sister were so worried they were going to have to take me to a hospital but i begged them not to. Instead they forced me to take two (2) 5 mg of Lexapro for 2 nights. The first night I had akathasia & insomnia really bad , did not sleep at all (maybe 2 hours). The second night was even worse that the previous..my head felt like some one was screwing into it or squeezing it, extremely fast heart rate, everytime I would feel like I was drifitng to sleep this weird twitch in my brain would jolt me awake. Also as I started to drift, the bridge of my nose and along my cheekbones started feeling like there was pressure (almost I had my glasses on my face but I didn't). This feeling tunred into almost a numbness and I had to tap my face to make it go away. This happened throughout the night. My jaw also began to feel like I needed to rip the bottom one off...just a tense, hurting ...i don't know, I know these all sound crazy and if I didn't exprience them I would have thought so too. Needless to say I refuse to take anymore. It took a few days for the squeezing head feeling to go away and now I feel like I have delayed my progress. My anxiety and restlessness inside has been increased more than it was.

 

Everyday I feel like I am living in a nightmare...and what makes it worse is that my family wants to help because they see me suffering but really cannot believe I am still going through withdrawals...or if they do they think it is worth the chance to not ruin the next few years and see if I can get back on something. They just want the old me back and they want to see me happy (so do I!) They cannot phathom how I will be able to make it years like this and honestly neither can I at this point.

 

My symptoms in the beginning and now:

 

Weird dizzy feeling when I am at work on the computer - looking from one thing to another...would make me disoriented. It was pretty bad in the beginning - I still get it sometimes.

 

dizziness/disoriented - can't really explain it (still have that - worst when I am in stores or places I have to look around at stuff ..I guess my head is moving around too much). I feel like it got bad again after I took the 2 Lex.

 

morning anxiety/fast heart rate -was getting a little better for awhile now have it every morning but the dread of facing this another day doesn't make it any easier. This also happens at random times during the day - I am so jittery/anxious. If I am sitting at work, I begin to speak fast to people I guess in an attempt to release some of this feeling. This type of anxiety is totally different from my original - I can tell the difference. I am also sitting at lunch ( it happens a lot at lunch at work) and I eat really fast and talk a lot. I try aand physically relax my body but my insides are going nuts...they are so anxious I am looking at the clock to see how much longer i have to sit there and sometimes leave early to at least walk to my desk. It is such a scary feeling i have never had before this. It might be considered akathesia.

 

various head pains/headaches - I was having a severe headache almost every night for a month but those have seemed to go away for now. It would sometimes be after I had the bad dizziness and it would turn into the headache. I never had migraines but I think it was similar..only think that would help is to go to bed. So for that time I would fall asleep at 8 o clock each night on the couch.

 

some tinnitus- has this early on for a few days, went away, now had it for a day or two (not even when I was trying to sleep).

 

insomnia - Had those 4am wake up calls and some sleepless night for awhile. Since the headaches started though I was able to sleep. I am still sleeping o but wake up at 530 ish no matter what time I go to bed. I think once I start to wake-up I know that this stuff i am going through is real and I start to think and get nervous, can't go back to sleep.

 

Depersonalization - How scary!! I never had this before. I have it intermittently when I am at work and talking to people. I have to try and look away and look bak again to try and refocus in on them but I can't concentrate, feel like everything around them is weird.

 

I am probably forgetting a few things but overall I have lost a lot of weight ( I was at 97 at one point). I have been eating more lately - usually better at night. I have some stomach problems but not too bad. Was dry heaving a lot in the beginning but I think that is because of my anxiety over all this..not sure.

 

wow...this is so long I am so sorry.

 

 

*At the time I was struggling with vulvodynia for about a year, then I started to have neurological issues like burning and heat sensations in my upper legs and in my legs, started to even feel them all in other parts of my body. I went to a bunch of different doctors (gyn, rhuemotologist) who did a multitude of tests. MRIS, spinal taps..nothing found. I just recently got my records sent from the neurologist (since this was 5 years ago and I forgot). She diagnosed me with multifocal paresthesias (a sensation of tingling, burning, pricking, or numbness of a person's skin with no apparent long-term physical effect). Basically they couldn't find anything. I was also diagnosed with inflammation cells in my eyes. They cause floaters/ web like things in my eyes. I have had these before I ever took ssris.

 

 

So with these health issues that no one could diagnose and that were affecting my relationship, came a lot of anxiety from my part. I thought I would be dealing with these health issues for a long time and because no one could tell me what was causing them it was scary. I think both the neuro symptoms and anxiety both are what caused the neurologist to put me on Zoloft.

 

 

**It worked well for me but I didn't want to be on it forever and weaned off after about 1 year. I was just graduating college and starting a long-term substitute teaching job (not the best time to go off). So as you can imagine, after coming off and starting this new job, I had horrible anxiety..crying all the time, panic attacks (which I never had before), would call up my parents from the classroom thinking I was going to get fired, i wasn't doing a good enough job and that I was failing at being a good teacher. So am i a perfectionist and do i have underlying anxiety...yes...however it was always directly relate to something happening in my life which caused me stress. I was offered a full time teaching position for the next year but was so anxious, crying about it and decided to turn it down. I really didn't know what I was going to do next. I started to talk to a family therapist I had once seen years earlier. She suggested Lexapro.

 

________________________________________________________________________________

12/31 - Last night was the worst of my life. I did not sleep AT ALL. During the last few days I have been experiencing some muscle twitches, mostly in my legs the day ...like uncontrollable muscle spasms.

 

Last night at around 8 ish I started to get a restless feeling in my legs. I felt like I had to keep moving them...it was torture. I tried to take my magnesium (which I take every night) along with a bath with epsom salts...but I feel like it is more neruological than muscular.

 

I moved from my bed to the couch numerous times and literally had to move my legs (and sometimes my arms) every minute or so. I would try and force myself to keep them in one position but each time I would have to move them. I also began feeling the weird heavy feeling along the bridge of my nose and down the sides f my nose (as if there were glasses on my face) but there wasn't...then it starts to feel numb.

 

This is exactly what happened to me around 3 weeks ago when I tried to reinstate on Lexapro after 4 months off. I also had a very weird head feeling like someone is squeezing my brain. The numbnesss and restlessness had diminished a few days after I stopped the 2 pillls of Lex, however the head things stuck around but got a little better.

 

________________________________________________

 

1/1 - Last night was the worst of my life. I did not sleep AT ALL. During the last few days I have been experiencing some muscle twitches, mostly in my legs the day ...like uncontrollable muscle spasms.

 

Last night at around 8 ish I started to get a restless feeling in my legs. I felt like I had to keep moving them...it was torture. I tried to take my magnesium (which I take every night) along with a bath with epsom salts...but I feel like it is more neruological than muscular.

 

I moved from my bed to the couch numerous times and literally had to move my legs (and sometimes my arms) every minute or so. I would try and force myself to keep them in one position but each time I would have to move them. I also began feeling the weird heavy feeling along the bridge of my nose and down the sides f my nose (as if there were glasses on my face) but there wasn't...then it starts to feel numb.

 

This is exactly what happened to me around 3 weeks ago when I tried to reinstate on Lexapro after 4 months off. I also had a very weird head feeling like someone is squeezing my brain. The numbnesss and restlessness had diminished a few days after I stopped the 2 pillls of Lex, however the head things stuck around but got a little better.

 

Now this back and I am soooo scared it might turn into akathesia where I can't sit still. As I am writing this I am having some of those muscle spasms.

 

I really can't do this anymore and don't know what else to do. I took generic xanex the night before this one (i have been using them sparingly, I have an rx for .25mg and take half of it. Could this be doing something?

 

I really thing I need to try and get back on another AD but am so scared to have another reaction at this point....however I know I can't continue on like this. My heart is racing, trying breathing exercises to get it down...they work for a few minutes.

 

PLEASE HELP!!!!!!

 

___________________________________________________

 

1/3 - I managed to get some sleep last night ( really don't know how)...but my legs feel like they are burning, achey, wormy, need to be moving since I got up. I am trying not to think about it..need to go to work in a few minutes but am not sure how i am going to do this.

 

I think I could be developing tardive akathesia....did anyone go through this. It was manage when it was just at night but I can't do this all day. Please help!!!

 

Is there anything that would help this??? Should i go to a hospital or contact Dr. Gelnmullen or someone?

 

 

Now this back and I am soooo scared it might turn into akathesia where I can't sit still. As I am writing this I am having some of those muscle spasms.

 

I really can't do this anymore and don't know what else to do. I took generic xanex the night before this one (i have been using them sparingly, I have an rx for .25mg and take half of it. Could this be doing something?

 

I really thing I need to try and get back on another AD but am so scared to have another reaction at this point....however I know I can't continue on like this. My heart is racing, trying breathing exercises to get it down...they work for a few minutes.

 

PLEASE HELP!!!!!!

_______________________________________

 

1/4 THIS MORNING- remember someone on here saying they felt like their brain was being squished...this is one of the many frightening symptoms I felt last night. I had the akathesia /restless legs all day...had to keep crossing my legs and getting up. Then I managed to go on the couch and elevate y legs and cross them...it was really hard but I watched some tv- then decide to go to bed.

 

First the restless legs, akatehsia in the legs/arms.... burning feeling in different parts of my body, numbness...everytime I go tin a position I would have to move because of one of these neurological things happening. I feel like I am being tortured. I had the weird numbness feeling in my face (around the bridge of my nose and face) and also in different parts of head plus this feeling my brain is being kneaded like dough/kinda num all at the same time. I feel like I am at my witts end here...can't go on feeling like this.

 

I believe this is all from the adverse reaction to reinstating lexapro...so now I have withdrawal and and adverse reaction. Has anyone experienced this ? is there anything that helped I did not sleep AT ALL ...these feelings jolt me awake each time I try to relax......I can't go on like this.

[spectio]

Good morning ,Need hope, boy, just reading your narrative made me feel so sorry for what you're going through. I'm going to defer to alto and the other more experienced members about specifics for you. I can say though that the symptoms you are feeling really sound like 100% WD . I know that doesn't necessarily make you feel any better but I don't think this is the return of any of your original problems. I can relate personally to just about everything you're going through. I have felt and continue to feel just about all the same things. I DC'd exactly four months ago from remeron after being on it for 11 years. The worse symptom right now is the nervousness. I know about waking up with the dread and anxiety day after day. I can say though that the dreadful feeling is getting better in the mornings which is a godsend. Still having dizziness, nausea off and on , headaches, some depression, some sickishness feelings on and off. Sleeping is pretty dicey too. I also wake very early and can't go back to sleep. I think I rad somewhere that lexapro is very hard to discontinue. Anyway, please wait until the site administrator can counsel you. Please don't go back to these terrible poisons. Hang tight and be strong! You're not taking any supplements, etc, are you. They really do seem to intensify WD symptoms!

[Altostrata]

Hello, niknash. I am so sorry you are having this reaction. Thank you for joining us and posting your story.

 

Did you have brain zaps for a year off Zoloft?

 

You are no longer taking Lexapro?

 

It does sound like your system has become hypersensitive, that's why you had that reaction to Lexapro.

 

Did your symptoms worsen after you started taking the occasional Xanax? You may be having a paradoxical reaction to it, or rebound at the half-life point, around 11 hours after taking it. You might try reducing the dosage, to a fraction of a tablet.

 

Whether we call it akathisia or whatever, it does sound like you are having severe withdrawal symptoms. I hope you give your GP a very hard time about that irregular "tapering" schedule, which doesn't deserve to be called tapering!

 

We know people do recover. This can be very slow and gradual. Stay calm and focused on taking care of yourself.

 

Are you still working? You might want to take medical leave if the stress is too much for you. You'll need a doctor to do the paperwork.

 

Keep on taking magnesium and the Epsom salt baths. Magnesium is soothing to your nervous system, too.

 

We recommend psychotherapeutic techniques such as mindful meditation to help cope with symptoms, so you don't panic and go to the hospital, where they won't know what to do and may dump all kinds of drugs on you that will make you worse.

 

You might contact Dr. Glenmullen. I'm not sure if he can help people with established withdrawal syndrome, but he might know something. Most doctors think benzos help with withdrawal symptoms, but don't account for the hypersensitivity and paradoxical reactions.

 

(You've done such a great job recounting your history, it would help if you summarized it in your signature, instructions here.)

[peggy]

what a horrible experience you have been through! I can feel your desperation in your words

you have done really well to endure it!!!!

 

sounds like you had almost a serotonin syndrome when you took the lexapro after 6 weeks off - the pressured head, jaw stuff and incredible anxiety sound like it..

 

I had an intense anxiety reaction to pristiq after being off effexor for 6 weeks - it is such a scary feeling. and i can so relate to scouring information boards and reading posts hoping to find one to make me feel better - unfortunately, most of them made me feel more and more frightened - i would think, oh know, that will happen to me. Then i would start to wonder just how bad will i get, and on and on it would go and my fears would just escalate. It's so weird because when i don't have anxiety (like now) I can think of those things and it doesn't bother me - and i can't remember the feelings (except they were awful) - it's like childbirth to me - i remember it was painful, but until i am experiencing it again I can't bring the pain up...

[Nadia]

Niknash,

 

I relate to SO much of what you describe. That is very, very similar to what I went through, and my symptoms got worse at about 3 or 4 months after quitting cold turkey (same time frame for the time I tried to quit before this time, which was a taper, but not slow enough). I also was freaked out and in need of hope.

 

First off... what you need to know right now is you CAN get through this, and it WILL get better. No one can tell you a time frame because it's different for every person, but whether you decide to keep off the ADs or try to reinstate or whatever, you will be OK.

 

The main things I would recommend right now is 1. try and go on a walk every morning, as much as you can handle (at first I felt like I was going to pass out and needed to enlist my mother's help, so I can understand if that seems overwhelming). And 2. keep taking magnesium or magnesium baths (search under Symtpoms and what helps) to soothe your anxiety and improve your sleep. It's not magic, but it gradually helps.

 

YOU ARE NOT ALONE!! I am so sorry for what you are going through and feel for you deeply. Reading stuff on this site and others like it can make you freak out even more. I remember thinking I couldn't stand a single day more of what I was going through... what do you mean YEARS?? But though some people take years to get fully better, that is not the norm, and most of us gradually improve.

 

I can tell you that I am now in a MUCH better place than I was when I first found this site. THERE IS HOPE.

 

N.

[niknash]

Hello, niknash. I am so sorry you are having this reaction. Thank you for joining us and posting your story.

 

Did you have brain zaps for a year off Zoloft?

 

You are no longer taking Lexapro?

 

It does sound like your system has become hypersensitive, that's why you had that reaction to Lexapro.

 

Did your symptoms worsen after you started taking the occasional Xanax? You may be having a paradoxical reaction to it, or rebound at the half-life point, around 11 hours after taking it. You might try reducing the dosage, to a fraction of a tablet.

 

Whether we call it akathisia or whatever, it does sound like you are having severe withdrawal symptoms. I hope you give your GP a very hard time about that irregular "tapering" schedule, which doesn't deserve to be called tapering!

 

We know people do recover. This can be very slow and gradual. Stay calm and focused on taking care of yourself.

 

Are you still working? You might want to take medical leave if the stress is too much for you. You'll need a doctor to do the paperwork.

 

Keep on taking magnesium and the Epsom salt baths. Magnesium is soothing to your nervous system, too.

 

We recommend psychotherapeutic techniques such as mindful meditation to help cope with symptoms, so you don't panic and go to the hospital, where they won't know what to do and may dump all kinds of drugs on you that will make you worse.

 

You might contact Dr. Glenmullen. I'm not sure if he can help people with established withdrawal syndrome, but he might know something. Most doctors think benzos help with withdrawal symptoms, but don't account for the hypersensitivity and paradoxical reactions.

 

(You've done such a great job recounting your history, it would help if you summarized it in your signature, instructions here.)

 

No - no brain zaps after a year off Zoloft...the panic and anxiety levels were what brought me to Lexapro. My symptoms worsened after the 2 Lexapro pills..the xanax does create rebound anxiety for me..haven't taken it in awhile.

 

I am not working - on medical leave but have to now find a way to get signed out for more than 2 weeks. I have been to a few psychiatrists and one has told me I need to do an outpatient therapy program in order to remain signed out...waiting to hear from her. My GP told me one every other day for two weeks and then stop....I was the stupid one who added the rest because I felt it was too fast and thought I would stretch it out. I read about the half-life but it didn't occur to me that the difference in dosages would have that much of an effect.

 

I will work on the signature part thanks

[renee]

Hello there,I read your post and starting crying.Ive been on cipralex for almost 6 years and have gone off cold turkey once and a few times just like you did.i hand the same same things as you happen!I had to go back on.Now since finding this site im very slowly tapering im down to 12.5 from 20 over 3 months.Its going much better.Im here for u please hang in there!!!!!!!You r not alone

[niknash]

I tried to go back on Lexapro about 2 months ago - two 5 mg pills and had a horrible adverse reaction. Has anyone had success with going to an even lower dosage like 1 mg or would I have ay luck going on another AD to stop some of these horrible symptoms. I really don't think I can take one more day like this.

[Altostrata]

niknash, I moved your post here because it needs your history to be answered properly.

 

Clearly 10mg Lexapro was too much for you. Your symptoms sound like your nervous system has become hypersensitized. Whether a lower dosage of Lexapro or any other SSRI would help you at this point is anyone's guess.

 

All you can do is experiment. Do you have any Lexapro left? You might want to try a quarter of a 5mg tablet, or 1.25mg.

 

Milligram for milligram, Lexapro is a very strong SSRI. It is a "concentrated" form of Celexa. You might be able to tolerate a very low dose, 5mg for example, of Celexa.

 

There's no telling. Any of these things might make you worse, too. If this type of reinstatement works, you might wait for a while until you stabilize and then use a liquid compound to very, very gradually taper off.

[niknash]

Alto,

 

Has anyone here had any success when trying to go back on such a low dosage? I took 1/2 a pill (5mg) for two nights in a row..didn't take 10 mg all at once.

 

That is my fear of this making it all worse...but honestly, I don't know how much longer I can go on like this. It had been almost 6 months since I stopped and almost 2 months since I tried to reinstate. The reinstatement definitely gave me more symptoms and most of them have stuck around or at least been on and off since then. Those 2 nights were the scariest in my whole life but right now I have nothing...no job, nothing in my life to keep me going every day. I have nothing to live for .....I don't believe I have a future ahead of me. And no matter how much I read other people's success stories - they are not me and no one knows what my future holds. I can only look at others symptoms and doing that is not very promising, as I feel I will be in the group who is here 6 or 7 years later and who hasn't gotten much better...

 

I am 28 years old and a newly wed....I was supposed to be starting a family ....now i may not have a husband to start one with or a future at all.....and if I don't heal and I still going through this in a few years..then what????

 

Just really wondering if this has worked for anyone.

 

Nicole

[Altostrata]

True, no one knows what your future holds.

 

Sometimes reinstating at a low dose works, sometimes it doesn't. 5mg of Lexapro is not tiny, it's equivalent to 10-20mg Prozac.

 

It's not true no one has gotten better. Recovery is very gradual. I'm almost recovered. Read other people's topics to see how they're doing.

 

You need to take responsibility for your own recovery. No one can tell you what to do. It's a crime that doctors are no help in this situation, but it's the reality.

 

Please put your history in your signature. It makes responding to your questions easier. Here are the instructions.

[niknash]

Alto,

 

when you say sometimes it works and sometimes it doesn't - do you have any people you know who it has worked for? 5mg of Lex is = 10-20 of Prozac??? Wow.. I didn't know that. Isn't it also = to about 10mg Paxil?

 

Right now my symptom of the dizziness is so debilitating I am having a hard time doing anything. That is a main reason I would consider going back on something - especially seeing people on here who are dizzy 6 years later.

 

I see a lot of long-time people here and wonder how do you have the energy to get up each day? To me there are symptoms that are managable and some that are not. I can deal with a lot of the other stuff...but this dizzy/disoriented/drunk feeling is really got me.

 

I know that no one can tell me what to do. God, why were we put in this situation in the first place???? This is a decision that will make or break my life. I will add my signature.

 

Thanks

[Altostrata]

5mg of Lexapro is equivalent to 10-20mg Paxil too. You might try 1mg Lexapro and see if it helps. Lexapro comes in a liquid.

 

There's no way to tell if some other SSRI will behave any differently for you.

 

Don't blame yourself for your situation. We are all victims of medical error and ignorance.

 

Read this for background information What is antidepressant withdrawal?

[Rhiannon]

Be careful with Xanax. It's short-acting, so if you don't take it every four hours or so you can go into withdrawal symptoms (anxiety, restlessness, panic attacks, breathing problems) in between doses.

[ChessieCat]

For anyone reading this topic, I have been tapering Pristiq using compounded capsules with slow release formula.

 

tips-for-tapering-off-pristiq-desvenlafaxine